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Direct linkSiméon T. A. Lahaije; Jorien Luijkx; Aly Waninge; Annette A. J. van der Putten – International Journal of Developmental Disabilities, 2024
Families with a child with profound intellectual and multiple disabilities (PIMD) have to manage the child's pervasive support needs. To ensure that families are able to manage these needs, they should be properly supported. However, knowledge about the specific support needs of these families is sparse and fragmented, nor is it known if and which…
Descriptors: Family Needs, Children, Severe Intellectual Disability, Multiple Disabilities
Kruithof, Kasper; IJzerman, Lisa; Nieuwenhuijse, Appolonia; Huisman, Sylvia; Schippers, Alice; Willems, Dick; Olsman, Erik – Journal of Intellectual & Developmental Disability, 2021
Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. Method: To explore how parents and siblings of persons with PIMD view siblings' role regarding future care/support for their family member, we interviewed eight…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Siblings, Role
Nieuwenhuijse, Appolonia M.; Willems, Dick L.; Olsman, Erik – Journal of Intellectual & Developmental Disability, 2020
Background: Quality of Life (QoL) may be a factor in physicians' decisions on treatment of persons with Profound Intellectual and Multiple Disabilities (PIMD). We explored the perception of physicians on the QoL of persons with PIMD. Method: We conducted semi-structured interviews with seven experienced physicians treating persons with PIMD,…
Descriptors: Physicians, Attitudes, Quality of Life, Severe Intellectual Disability
